Abstract Details

Title Impact of HCP and Caregiver Education on Multidisciplinary Care in Spinal Muscular Atrophy

Topic Research Methodology, Education, and History

Presentation(s) Research Methodology and Education Posters (7:00 AM-5:00 PM)

Poster/Presentation
Number 047

Background The treatment landscape for SMA is changing rapidly and dramatically. Multidisciplinary and supportive care continues to be needed for those living with SMA. Clinicians and families face challenges related to keeping abreast on these rapidly developing events.

Objective To assess the influence of online CME and caregiver education in improving learner knowledge and self-report of positive behavioral impact related to Spinal Muscular Atrophy (SMA) care and management.

Design/Methods One 70-min. CME activity, and 6 caregiver modules (totaling 145 min.) were launched live-online July - September 2020 and remain on-demand for 1 year. Test questions were administered pre-, immediate post-, and 2 mos. post-activity. Responses from learner polling, and follow-up surveys were analyzed for engagement, lessons learned, and continuing gaps. McNemar tests compared paired responses (pre/post & pre/2 mos.) with Cohen’s d for effect size.

Results As of 10/13/20, there were 410 HCP and 233 caregiver engagements. Of the 8 pre/post test questions, 3 out of 4 HCP questions showed pre to post improvement, as did all 6 caregiver questions. Follow up surveys will probe on behavioral impact, and will be completed by caregivers 2+ mos. post education. Preliminary HCP results show 60% of respondents reporting positive impact of the educational activity on clinical practice (n=40), with write-in examples describing improved utilization of gene-replacement therapy, improvements in family communication re. specialist care, and earlier specialist referrals . 60% also reported positive impact on patient experience, with write-in examples describing increased patient communication time and better overall family education, improved information sharing re treatments and referrals, and improved multidisciplinary care.

Conclusions Post-test and participant surveys support the positive impact of live-online CME and caregiver education focused on improving clinician and family knowledge of SMA, management options, and general care delivery.

Authors/Disclosures
PRESENTER	No disclosure on file
Carole Drexel (PlatformQ LLC)	Carole Drexel has nothing to disclose.
Mary K. Schroth, MD (Cure SMA)	Dr. Schroth has received personal compensation for serving as an employee of Cure SMA. The institution of Dr. Schroth has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. The institution of Dr. Schroth has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. The institution of Dr. Schroth has received research support from Biogen.
	No disclosure on file